Have any Canadian PALS been prescribed Lithium?

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rcharlton

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Hi,

Just wondering if any Canadian PALS have been prescribed lithium carbonate.

My ALS specialist is not prescribing lithium to his patients.

Although the results of a larger study are needed to determine if lithium is an effective treatment for ALS, it seems like the risks are low for taking lithium. The side effects are wel known as it has been used to treat bipolar patients for some time - and there seems to be no evidence that it accelerates the progression of ALS.

So I am keen to start right away.

Thanks.
 

givenin

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Yes the Calgary ALS clinic is perscribing it to all it's PALs.
 

CindyM

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When Al comes back from his vacation I am sure he will have some news. Last I heard he was going on it too!
 

Al

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I'm back but with a wicked cold. I started Lithium on Tues. this week. I understand there are a dozen or more in Toronto on it.
AL.
 

givenin

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The Dr's in Calgary want the PALS taking Riluzole to take Lithium. My husband startd last Friday and will start the Riluzole in another week.
Question for you Al how often do they want you to have blood work when you start taking the Lithium? Sorry to hear about the cold and hope the snow didn't hinder you holiday.
 

Al

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Lee wasn't real crazy about driving 8 hours in a blizzard but she's a pretty good driver. Only the last 4 were real crappy. I get blood tests every month for 3 then 1 every 3 months for first year. I take Riluzole too.
AL.
 

Elaine Ramos

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My husband has ALS and wants to take lithium but our ALS Clinic doc won't prescribe it because of its toxicity. My husband said that I'm dying anyway, what do I have to loose? I wonder if the ALS doc won't prescribe, then who can?
 

Al

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Your General Physician should be able to prescribe it. In the lower doses it is not as toxic as for it's other uses. Regular monthly blood tests check for levels in the blood and liver function. Print out the study and other information for the doc. He won't have heard of it. My GP has 3 ALS patients and hadn't heard about the study until I emailed him all the info last week.
AL.
 

Elaine Ramos

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Al,
what if he is taking creatine too? can he also take lithium?
Elaine
 

Al

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I'm not sure but I think someone here said it was not good to take creatine with lithium. A pharmacist might be the best one to ask or the GP.
 

rcharlton

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Thanks everyone. I'm going to Sunnybrook to see about a prescription.

Elaine - your husband should not take both creatine and lithium - too hard on the kidneys.
 

ZenArcher

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I can say that I am taking both creatine and lithium. I won't say you should or shouldn't. There have been studies done on creatine and at the dosage I'm taking (5g) there has been no proof of kidney stress that I could find. I do however drink at least 1.2 - 1.5L of water a day.
 

Mark

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As I have previously talked about, any licensed physician can prescribe lithium. Most likely any physician uncomfortable with its toxicity has little experience prescribing it. Lithium has been around almost as long as I have been. That is 60 years since it was discovered in Australia. It has been used in psychiatry all of this time. I started prescribing in residency in 1970. I myself have gone on it for "bi brachial amyotrophy". Whether my condition will evolve to ALS is not clear. However, given what I consider to be minimal risk with lithium that is appropriately prescribed I have gone on it. Good luck.

Mark
 

rick/Wpg

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Hey All
I was at my neuro's and picked up my first prescription of Rilutek on Thursday...asked him about lithium...he is very aware of it as he is the main als neuro in Manitoba....rather than prescribe it himself he simply wrote out the recommended starting dosage and target blood levels for me to take to my GP with a note that my GP could call him if he had any questions. He said the GP would have more experience with lithium than he had anyhow and that it would make more sense for him to track the blood levels,etc as I see him more often
Seems you do have to be very pro active tho to get things rolling....
 

LesliePettie

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Hi everyone;
Thank you all for the information you are sharing in this thread. Oliver.ca passed the thread to us. Thanks Oliver.

My husband, Tom, was diagnosed with Bulbar ALS in January. We began noticing symptoms a little over a year ago. So far the problems he is encounting is that his speech is very slurred and he sometimes has difficluty swallowing. His limbs remain strong without numbness or twitching.

We found the Italian lithium research article on the net a couple of days ago. My daughter is a research scientist and after reading the article she told me how very promising this research is. She is very excited.

We are in Edmonton so I am happy to hear that the clinic in Calgary is prescribing Lithium as well as Rilutek to their PALS. Maybe the doctors here will be a little more receptive to perscribing Lithium then they seem to be in some other areas of the country.

We go to the ALS clinic on Wednesday for our second visit, so we will take the Italian article with us and show the doctors.

As you all know, with Bulbar we don't have a lot of time so we will be pressing for them to prescribe Lithium to us ASAP. I will let you all know how it works out on Wednesday.

Regards,
Leslie and Tom
 
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